Heart of Beckett

Leah left for home last night to be a little closer to work for the day today. I was with Beckett last night until after midnight. He was extremely irritable and needed a lot of attention. I tried to help him fall asleep over and over, but he wouldn’t remain asleep for much longer than 5 minutes until he would then awake in hysterical crying. Thankfully he was always consolable, it was just exhausting. Little did I know that he was merely giving me a glance at what was in store for me all of today. Now, to be fair…please feel more bad for him then me, as he is the one “uncomfortable” and crying.

I held him multiple times today, his nurse held him, we put him on his stomach, we put him on either side, we inclined his bed, we flattened his bed, I’d “swing” him, I’d pat him, I’d rub his head, I put a towel over his eyes, I fanned him with my hands, on-n-on-n-on…..until we’d either make it to his scheduled methadone dose or have to give him a rescue dose of morphine (which hardly helps anymore). The thing is, all of the aforementioned attempts actually worked….but for only 5-10 minutes (I think I had him sleeping one time for about 15-20 minutes). He’d startle himself and wake up aggressively crying. I tried to do all that I could to “pacify” the situation without the intervention of drugs; for the most part, it kind of worked. I got so tired from the past 24 hours or so, that when his Respiratory Therapist came in for a 5 minute treatment, I sat down in a rocker and nearly immediately began to snore……ooops. 😉

Please pray as he has continued to withdrawal pretty hard the past few days. He’s also lost some weight. However, that is expected as he is just now recently being slowly reintroduced to his feeds. He threw up a few times today as they’ve continued to increase his volumes daily (so needless to say, they are going to slow down a little now because of that). From a respiratory standpoint, he’s rockin’ it. He doesn’t really desat at all, even when he’s crying…which is great! He’s still a little yellow from the increased level of direct bilirubin, but we were warned that it may take 7-10 days to really see any results from the Zosyn (his infection medicine for this).

We really are content and pleased where Beckett is at physically. We were just sitting here together in his room reminiscing not only how far he’s come over the past few months, but especially even the past few weeks. It was a beautiful day outside today, and we hope and long to eventually get to spend a beautiful day like today outside as a family, Beckett and all! 🙂 #ODAAT

#GoBeckett!

Well, from a respiratory standpoint along with his cardiac “issues”, he’s actually still looking pretty good. It’s all kinda relative though. I mean, though he’s back down to room air (21%), he’s still on 6 liters of support from his VapoTherm. And though from a cardiac standpoint he’s “looking good” as well, he’s still on heart medicine and has an enlarged heart. BUT, he really is having better days as-far-as everything he’s been battling the past few weeks.

With that being said, he has been withdrawing pretty bad off-n-on all day today. He pretty much had to be held all day, which afforded a lot of opportunity to his grandparents today! 😉

His bilirubin is still up. In fact, it’s even a little bit higher today from yesterday. Leah said that he looks like an Oompah Loompah (however you spell that). I think he just has a nice tan. But on a more serious note, he is being treated for that…we’ve just been informed that since it’s “direct bili”, it takes a few days to see the results from the medicine. But rest assured, he’s definitely being treated for it (along with many other things).

We have to be reminded that even though he’s been “high as a kite” pretty much all day from the rescue doses of morphine, these were the “struggles” we were longing for when we were over in the PICU back in January. We are so thankful for yet another day as we take on this journey right alongside of Beckett one day at a time.

Oh, also…he’s lost a little weight. Not much, but some. So that’s something else to be praying for as well.

Thanks everyone! #GoBeckett! #ODAAT

Beckett has had what the nurse has reinforced to me “a good day”. I think it was just one of those days for me because every little thing “wrong” was bothering me. It wasn’t that horrible things were even happening, but forsome reason I had to keep asking any nurse or doctor today if everything was really ok.

My day began with the nurses telling me how good Beckett is looking and that he is doing great (which he was, and is). However, within a few minutes I was politely pulled aside into a conference room by one of Beckett’s doctors to talk with me about a few things. She began by saying, “Beckett is doing well, but…”….that’s never something you want to hear. She (the doctor) proceeded to tell me that Beckett’s gall bladder wall is thick and his direct bilirubin is back up again. He also has some build up of sludge in his bioducts. She said that GI has been called over from the PICU to check it out. Additionally, Beckett’s kidneys are enlarged. There are more details that I will leave out, but all-n-all, the GI doctor said that they think it’s going to be treatable via medication. That’s good news because there was a chance that they were thinking of needing to send Beckett back over to the PICU to do a study and if unfavorable results emerged, surgery was the next option. Soooo, please keep praying that surgery is not the case and the meds they’ve already put him on will be more than sufficient for this “problem”.

Beckett’s fentanyl was decreased today. He’s handling it weeeeellllll (that’s my version of a cautious “well”). He really comes off any pain meds these days with much difficulty. They had to intervene a few times today by way of administering his scheduled methadone early, and then eventually a rescue dose of morphine. To be quite honest, it kinda freaks me out AND breaks my heart all at the same time. When he was withdrawing hard earlier today before the additional pain meds he just inconsolably cries and it looks like he’s going through so much pain. And when he’s not crying, he’s doing things like crossing his eyes, or doing other funky things with his eyes, or just staring straight at the ceiling. He just gets so snowed that it’s hard to even see his personality through the gaze. We had been warned months ago that his withdrawals will be challenging for both he and us…..and they weren’t kidding. The proper perspective here, however, is that his heart is pumping well and his lungs are looking better. In fact, I’ll conclude on this note…they did another X-Ray this morning and it actually stated that his plural effusion is gone (once again). It’s hard not to roll your eyes at the news, but I have to fight that urge as that certainly doesn’t display gratitude nor thankfulness. It’s just hard not to think, “yeah, it’s gone…..for now”.

So…please pray for our attitude (well, I should speak for myself, my attitude), continued healing (particularly for his gall bladder and kidneys now), along with a smooth(er) wean from his pain meds and even continual acceptance of the reintroduced “feedings”.

Thanks everyone!

#ODAAT
#GoBeckett!

Soooo, after a long day of classes, I finally made my way back “home” to Indy. Unfortunately, as soon as I got here Leah was leaving for Upland to head back to work tomorrow morning for another 12 hour shift (last one for the week). I literally saw her in passing on Monday night for less than an hour before I had to head back to Upland, and tonight was unfortunately eerily similar. We are truly doing ok though (for anyone who’s been wondering), but it has been an additional challenge.

Leah was texting me updates throughout the day (sorry to all my professors who could tell), as today was yet another “big day”. By “big”, I mean successful. Beckett has been successfully extubated once again. He truly looks great. Leah said that it went smooth and he seemed relieved to have that tube out of his throat once again.

Our surgeon stopped in the room earlier today inquiring about Beckett’s status (he has been out of the country on vacation for the past few weeks). He was discussing with the neonatologist as to why Beckett has had to go on and come off the ventilator so many times. They explained to him that it is a number of things, but Beckett’s reoccurring plural effusion (the fluid around his lungs) is a large contributor to his struggle(s). One odd thing he mentioned to Leah (and supposedly didn’t really explain much) was that if Beckett is still here in 3 weeks, he said that we are going to need to start talking about possibly doing his second surgery “early”. Now, before we freak out, we don’t really know what “early” means, and he really didn’t take the time to clarify, but it evoked some “brow-raising” at the very least. We were told last week by one of Beckett’s cardiologist that we will definitely be waiting on Beckett’s second surgery until late May at the EARLIEST, but most likely June or July. Well, 3 weeks is still April….sooo, I guess we will wait and see what the near future holds. I was also informed today that our “care-conference” (where all the docs, surgeons, cardiologists, nurses, and us all come together) will be happening sometime next Wednesday. That should be an opportune time to get a lot of questions answered and hopefully solidify a collaboratively derived strategic game-plan (how’s that for a mouthful). I am in great anticipation for that opportunity and will most likely feel much better after that finally happens.

That’s about it. Beckett really is doing “well”, just please pray for no more set-backs. I truly can’t imagine him (nor us) “handling” much more. It’s time for consistent “wins” and a regular flow of “good news”.

“But when the darkness of dismay comes, endure until it is over, because out of it will come the ability to follow Jesus truly, which brings inexpressibly wonderful joy.”

#ODAAT
#GoBeckett!

Happy April Fools Day! I really wanted to play some sort of April Fools joke with this update, but I literally could not think of anything that wasn’t terribly inappropriate or out-of-line….so I must refrain.

With that being said, Beckett has had a great day today! No “Joke”! 🙂

I began my day by stopping in this morning to see Beckett before I met up with a good friend for coffee. As I approached his room, one of Beckett’s doctors greeted me at the door and said that I cannot go in at this time because they were putting in another chest tube right then. This is Beckett’s 3rd chest tube to drain his re-accumulating fluid. They were able to remove about 60 mLs of fluid. Beckett responded really well to it. He looks like a brand new baby once again. He pretty much slept nearly all day today and when he was awake we had some good time just looking into each other’s eyes as I just rubbed his head and legs, and held his hands. Leah was at work once again today trying to put in a full 12-hour shift (kudos to her…she’s a strong woman). She is actually on her way back down here right now, but unfortunately as soon as she gets here I will be leaving for home for classes to begin once again this week…my luxurious spring break has officially come to a close.

I had a good moment today discussing some theories and ideas I’ve been having about Beckett’s treatments with the cardiologist. I wanted to affirm that we will go even slower this time weaning him off of his pain meds. Obviously he has now been on pain meds much longer (3 months) than when we were first trying to wean the meds back in January (1 month in). Beckett has built up quite the tolerance to pain meds (unfortunately), and will need to be much more strategically weaned. He agreed and said that they will be sure to make sure they are even slower this time. I also asked about weaning him off of his IV hearts meds. I wanted to know why we are in such a hurry to take him off if they are so helpful. He said that there really is no rush and there really are no ramifications if Beckett stays on on them. So, with intent to give him all the support we can right now (especially while we attempt to wean off of pain meds once again), Beckett will remain on some level of heart meds until we possibly (hopefully) take him home or until his second surgery. I also had to ask about the plural effusion. I was glad they were able to drain it once again, but I wanted to know if they were really investigating WHY it keeps coming back. As a result, sometime next week we will officially be having a “care conference” with the surgeon, cardiologist(s), and his primary doctors and nurses in order to discuss 1)Where we are at 2)Where we are going, and 3)How are we going to get there. I will feel much better about Beckett’s “care” once I understand there is an actual plan. Lastly, I discussed the option of possibly doing a trach for Beckett. Believe me, I’m not excited about the idea…but I had to ask if it’s a “good” idea or at least something worth considering. He wasn’t very keen on that idea as he said that it is typically something that would stay with Beckett for a while, it’s another operation, and it will be very close to where they will be operating once again on Beckett within a few months (for his second surgery). He said it was a very intriguing idea, but after standing there and pondering the idea for a moment, he just wanted comfortable with it. Honestly, that’s all I needed to hear…but I had to ask.

I’m not quite sure why I add all those details to this post (as conversation like that happen often between us and the nurses and doctors), but I just thought I’d give you a glimpse into that side of our days here in the hospital.

As always, thank you for the prayers and support. We are still intently focused on leaving tomorrow’s troubles with tomorrow and living our days one moment at a time. Don’t get me wrong, I’m not “preaching” to not plan, prepare and ignore upcoming events…so I hope you understand what I’m saying. So I will claim it once more, One Day At A Time.

Stay tuned as we hope for even more good news throughout the upcoming days, weeks, and months. We are celebrating today with an old friend of ours I haven’t mentioned yet in our updates (I don’t think) who’s premature baby that was born around the same time as Beckett is going home today! That’s right, no April Fools Joke here! I’m so happy for them and cannot wait for our day to come soon as well!

#ODAAT
#GoBeckett!